Sorry for not posting anything over the last 10 days; I’ve been writing about my progress for nearly a year now, and I finally reached that point where I needed to take a break.

My progress has however been good – the wound is continuing to heal extremely well, and I’m now down to changing the dressing every other day. It’s currently looking as though I’ll only need to continue having the dressing changed for another week or two – by then it’s likely to be fully healed.

My meeting with the surgeon on the 7th went well; he was happy with my progress, and confirmed that the bleeding was nothing to worry about; simply a normal (if somewhat extreme) side-effect of having had my ileostomy for several months. The join in my colon is not narrowing, so there is no need to take any remedial action there – phew!

My next major appointment is with the surgeon on the 21st. In addition to whatever he wants to do, I want to discuss the drugs regime that I’m currently on, and how to alter it as I move forward. I’ve already taken it upon myself to halve both the loperamide and cocodamol doses that I was released from hospital with, but I suspect that there is a lot more that can be done in that area, and that doing so will probably have a positive effect on my quality of life too. I’m just a little wary of making too many major changes without agreement from my surgeon, as I’m well aware that the drugs are helping me to walk a fairly fine line at the moment.

Just had an issue with some blood in the toilet that prompted me to call my surgeon at home and ask for his advice. After a good 15 minutes talking about my progress to date his view is that that’s definitely nothing to be worried about, but he’s not completely happy that I’m making as much progress as he’d like by this stage of my recovery.

He suspects that a narrowing of the surgical join in my lower colon may be to blame, so he wants to see me at his clinic on Monday morning for an internal examination, where he can assess exactly what’s going on, and potentially resolve any problem there.

Part of me is mightily relieved that this isn’t a major issue, while another part of me is somewhat concerned about how he’s intending to resolve this for me. I now have disturbing visions of various medieval instruments of torture… though of course, in practice it will be good to actually know what the status is, so we can actually take whatever is the appropriate action.

It’s been nearly a week since I last posted on my progress. This was partly because there wasn’t enough changing from day to day to make the updates interesting, and partly because I came down with a rotten cold (that I’m just starting to pull through now) that left me completely wiped out.

Anyway, in the last few days the wound has continued to heal well; it’s noticeably closed up, and there is a lot less weeping. There is still some tenderness and inflammation around the extra “side” incision, and since I’ve now finished my course of antibiotics, the nurse took a swab to check that there was no infection present; there isn’t, which is good.

In general I’m still struggling to sleep through the nights properly, and I’m rarely getting more than three or four hours continuous sleep. Often less, which is very frustrating.

Overall I’d say progress definitely falls into the two steps forward one step backward category. There are days when it really feels like I’m making great progress, and then the next I feel like I’m back to square one again. But when I look back two weeks I can see that I am making progress, and that this is just going to be a matter of time…

And the good news is that on Saturday night I managed to almost sleep through the entire night; five hours initially, followed by a further two. It’s hard to describe how much better I feel for having caught up on some of my missing sleep, as well as seeing the improvement since I was first released from hospital.

The rest of the day has passed quietly, with another DIY dressing change (no problems, all seems to be continuing to heal slowly) and relaxing with my family and a good book while it poured with rain outside.

Sadly I forgot to take my “dinner time” medicines, and only remembered a couple of hours afterwards, so I’ve taken those late, pushing back my remaining dose of medicines to very late in the evening. I’m now (finally) waiting for my them to take effect, before heading for bed.

Here’s hoping for another good nights sleep like last nights…

Recently I’ve been rather caught up in the process of getting my ileostomy reversed, but it occurred to me that I’ve neglected documenting my progress in recovering from my chemotherapy.

My peripheral neuropathy continues to cause me lots of problems. My fingers, feet and toes continue to all feel numb and uncomfortable. Worryingly, I’m tempted to say that the problems in my fingers are actually worse, not better. I now struggle to touch-type at any kind of speed, without making lots of mistakes. Which is very frustrating indeed.

My tiredness feels hugely better. I suspect having a reasonable gap since I last considered this really highlights the change. But it certainly feels like the tiredness that I’m experiencing now is much more related to the lack of sleep that I’m going through with the ileostomy reversal, rather than lingering side-effects from the chemotherapy.

My sense of taste is now working fine, but there are some things that I would have previously described as being some of my favourite foods that just aren’t any more. Weird, but hey, I can live with that.

My problems with dry skin, and all the resulting flaking and peeling have all gone away. I can’t even remember when it went away, but it has. Although it’s no longer a problem, I may continue with the moisturising routine anyway. New age man and all that

I am still feeling the cold, and find it very difficult to get warm. As per the last post on this topic, I eventually broke down and reprogrammed the house temperatures. And I still don’t ever feel completely warm, despite everyone around me being fine. I’m beginning to suspect that this may actually be something to do with my peripheral neuropathy making my fingers and feet feel cold to me, even though the actual temperatures are perfectly fine.

So, overall, it’s progress!

In the end Friday night wasn’t as bad as I thought it was shaping up to be; I managed to get two disjointed periods of sleep, each just over a couple of hours long. Not ideal, but enough to keep me running.

This morning I felt well enough to venture out the house with my family and go to the local school Christmas faire. We only spent 90 minutes there, but it was enough to feel like I was at least temporarily back in control of my life again. The Faire was heaving with people too, which is really good news, as it should mean that we’ll make a good profit (I’m a governor there) which can be spent on extras for the children next year.

When we got home I decided to change my wound dressing, which apart from being a bit awkward because of its position, was really straightforward; it only took about 5 minutes. The inflammation looks to me like it’s still getting better, but to be fair, there’s not a massive change in appearance since it was changed on Friday.

This afternoon/evening I fulfilled my role as Dads Taxi, and ran my eldest daughter to and from a birthday party in Southampton. Although it wasn’t a massive distance to drive, it was the furthest I’ve been since my operation, which again left me feeling positive that things are starting to settle down into some form of normalcy.

And now I’m just waiting to see how much sleep I manage to get tonight. Spot the theme here?!

And the result from last night was that I got a great nights sleep, with no interruptions at all. Which was wonderful, as my energy reserves were just about exhausted.

Probably as a result of that, I managed to get out on my bike for the first time since my reversal operation; just a short ride to drop some borrowed books back to a friends house, but it was nice to get back in the saddle again, nonetheless.

Energy-wise I seem to be much better than after the last operation. I don’t feel as though the operation has affected my strength or stamina much at all, although the action of cycling uphill definitely pulled on the stitches in my wound. Keeping my rides infrequent, short and gentle is probably wise, for now at least.

The dressing change went as expected, with no obvious problems. The wound is still inflamed, but to my eyes improved since yesterday, which is good. The soluble stitches appear to be starting to dissolve too. Since I’m going to be changing my dressings myself over the weekend, the nurse gave me a few more supplies – a couple of dressing packs, some tubes of sterile saline, etc. My medicine chest is becoming comprehensive, if nothing else.

Unfortunately I seem to be struggling though a period of recovery that very much follows the axiom of “two steps forward, one step back”, and while yesterday was definitely “two steps forward”, overall, today appears to have been more of a “one step back” day.

Sadly, I’m not expecting a night of uninterrupted sleep tonight

On Monday night I got very little sleep again, but the good news was that on Tuesday morning, when I went to have my dressing changed, the wound tract was looking much better. Given how nasty it looked on Monday, there was far less sign of inflammation than I would have believed possible. I guess that despite my relatively large drug intake over the last year or so, I very rarely take antibiotics, and maybe that accounts for their dramatic effect when I do.

Unfortunately, the side-effect of taking the antibiotics is that they are making my diarrhoea worse, which meant that I got absolutely no sleep at all on Tuesday night, spending the entire night getting up and down to the toilet. Clearly this situation isn’t sustainable, but fortunately when I talked to my consultant on Monday evening, we had discussed the possible need to alter my drug regime to cope, and he’d set out some broad guidelines within which he was happy for me to experiment.

So, on that basis, in the short term I’ll increase my loperamide dose from 3 x 4mg per day to 4 x 4mg per day, biasing the dose timings slightly towards the latter part of the day/night, and see how things go. If that isn’t sufficient then I’ll need to discuss the situation with my GP, as it’s not possible to raise the loperamide dose further while staying within my guidance.

Wednesdays dressing change went well, with the infection of the wound continuing to improve rapidly thanks to the antibiotics. Pain from the wound site is higher than I remember from the days when I was in hospital, but still perfectly bearable. I expect this is a result of the surgeon injecting the wound with painkillers as part of the surgery, which will have long since worn off.

As the first night after increasing the loperamide dose, it will be interesting to see how well I cope tonight, and how much sleep I manage to get. More news soon.

This morning has been a whirlwind of visits to the GP. I first went there at 9am to renew my medical certificate, update them on my current condition, update all my prescriptions, and arrange appointments to have my wound dressed. I also got the prescriptions for painkillers filled straight away, as I only have 3 or 4 days supply from the hospital pharmacy, and I really don’t want to run out of them, which involved sitting around in the pharmacists for a lot longer than I expected.

I then went back home, and did all the paperwork that has built up in my (only 5 days) absence.

Then back to the GP surgery for my appointment with the practice nurse, to dress my wound. Except it turns out that I’ve already managed to get an infection in it. SIGH. So she called in the GP, who examined it and prescribed a weeks course of a broad spectrum antibiotic. So after having it cleaned out and dressed, and making a weeks worth of follow-on appointments, and engaging the district nurses (who will provide the redressing service over the weekends) I got to revisit the pharmacy to get yet more tablets. And had another long wait.

Then, when I finally got home, I discovered that I’d missed a call from my surgeon who was trying to check on my progress. Hopefully he will call back this evening, because I really wanted to ask some questions about my dose of loperamide.

I’m currently feeling faintly fed-up.

My first night home was great. I eventually went to bed around 1am, and slept right through to nearly 7am with only one interruption to visit the toilet. It’s amazing how much better you feel after a reasonable nights sleep. Suddenly the world looks like a completely different (and better) place.

Family and friends started turning up for my two elder daughters confirmation service at about 8:45am, and by 9:15am I was at the church with the kids (and my parents) to meet the bishop and listen to the last minute directions on the order of service. This took half an hour, after which we joined L. and the rest of our family and friends in the church, who were fortunately saving us some seats. And at 10am we started. To my surprise, I was fine all the way through the service (which went past noon) without needing to find the toilet, but the sitting/standing/sitting/standing game took its toll on my wound, and by the time the service had come to a close I was starting to feel both tired and sore.

Still, it was worth every moment to see the kids getting confirmed, especially as only yesterday it had seemed so unlikely that I would be able to even attend.

We then had everyone back to our place for lunch and an afternoon tea. I squeezed in some more drugs and a half hours snooze before lunch too, which helped immensely. In the end we had a great day – I hope everyone else did too, though the washing up was rather mountainous!

The only question now, is how well will tonight go? It would be nice if I’m able to sleep through the night again, rather than having to stay wide-awake and near a toilet all night.

Only time will tell…